MS'sing About with MS

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Month: April 2016

If you know anything about MS, I’m sure you think you know what’s coming next – a discussion about the number of lesions I have accumulated, gadolinium contrast and the like. Well, you would be wrong!

My first MRI, my spine, happened as an emergency. I was admitted to hospital as I was losing the ability to walk quickly, with no other previous symptoms. I was understandably nervous! I was asked if I was claustrophobic – answer – I don’t know?!? I was given some Ativan – effect? Nothing! I got changed into their “lovely” pjs and got onto this table and fed into a tube. I listened to the thumps and bangs and the pneumatic drill sounds, and it was all new to me.

I got the results – lesions on the thoracic and cervical spine. Transverse Myelitis. Further MRI of the brain proposed, indicative of Multiple Sclerosis. A whole load of big scary words. And, without the shadow of a doubt, life changing.

The second MRI was meant to happen within 3 weeks. Two months later I discover the paperwork has been lost. That taught me another important part of MRIs – hurry up and wait! The request gets put in, you wait to hear about the appointment, you follow up and then you wait.

The second MRI came. I had Ativan again – and fell asleep in the car on the way home afterwards, but it had no effect during the MRI. This time, because it was the brain, I was bolted to the table with the Hannibal Lector mask. I imagined that I need to scratch my nose every two seconds. The whole thing seemed to last a life time. I held the emergency alarm and kept willing myself not to touch it. I survived – I’m sure that most people do, but it seemed like a major hurdle to me.

I got the report and I google every word. It was like the worst auto-translate you’ve ever used. I was no wiser, other than the last sentence, which confirmed my MS.

MRIs came and MRIs went. I ditched the Ativan – seemed pointless. I ditched their pjs – I turned up in my own clothes that had no metal in them. I got used to the different sounds. I tried to count them, I gave up counting them. I resorted to singing songs in my head to get through it all. How many times did I need to go through Bohemian Rhapsody and Stairway to Heaven? How many of the songs in the Sound of Music could I remember, and sing through, in order?

The biggest challenge was staying still for the spine part of the MRI, because if you move, the image is poor – and there’s all kinds of things that move. Breathing – that makes you move. Lying still for a long time – that makes you move. MS – that can make you twitch and move. And most of all, being told to lie still, that definitely makes you move! But over time that got better too, because my MS gave me much less movement – my body just stayed put.

When the results came from these MRIs I spent a long time getting frustrated. My MS was getting worse, but the MRIs seemed to show that I was stable. I doubted myself – was I making it all up? Was I not trying hard enough? What on earth was going on?!? This massive machine was the gold standard for seeing my MS, for producing an image of it, for deciding what treatment we would do, and it was calling me a fraud.

Then my new neurologist explained that there were grey matter lesions that the MRI couldn’t see, and that’s where my progressive symptoms seemed to be coming from. Now I expected my MRIs to be stable! That machine wasn’t the boss of me!

Then this happened. I got in the MRI, they strapped me down, there were a few plinks and bangs, and then the table was moving out of the tube! No way! What had gone wrong? How much longer was it going to take? Was I going to have to come back on a different day? I looked at the technician. “What’s wrong? What’s happened?” “It’s finished!”, she said. No way… I’d fallen asleep and slept through the whole thing!!! What a transformation!

This year’s MRI was like visiting an old friend. In comfy clothes, I snuggled in to the Hannibal mask. The cushion behind my knees was bliss. It started up, those dulcet tones, and I drifted off. An hour and 45 minutes of uninterrupted sleep.

The results came – who cares? It seems there might be a new lesion or two that the machine can see, but I know it’s not seeing the full picture. That life changing experience is nothing more than a day trip to Vancouver, with a comfy sleep in a slightly noise, tiny tube.

What does music mean to you? Perhaps it’s something that you enjoy to listen to, in the car, on your phone, at concerts, on the radio. Perhaps it’s something you like to do – maybe you play an instrument or you sing. Maybe you do it for fun, with friends or on your own. Maybe you’re a music legend every time you sing in the shower!

Music was a huge part of my life. My earliest musical memories are singing in the car with my mum – we were the Everley Sisters, doing the harmony along with the Everley brothers! From here I progressed to the recorder – then flute, sax, piano, university, music teacher! Music was a huge part of my life. Even if I watched the tv I would make notes of the music I heard in the background if I thought I could use it in some way. On my travels I would buy instruments and search out local sheet music.

You may notice that I have been talking about music in the past tense. That’s because my multiple sclerosis causes cognitive issues for me. My brain gets overloaded if it gets too much stimulus, and then it shuts down my body. Music is one of those stimuli that shuts my body down. I can’t move or speak. No car radio, no concerts, no playing instruments. Music is gone.

However, this is not a pity party!! I have been looking for other ways to keep music in my life. My 5 year granddaughter has been playing the piano since the age of 5, and even though I’m biased, I can tell you that she is amazing! I use an app called Notate on my iPad and I compose pieces for her to play in her recital twice a year. It’s a wonderful way to use my knowledge and see it come to life through her fingers.

This time of year is fundraising and awareness raising time for the MS Society as we approach the MS Walk on May 15th. I decided to start my own campaign – Make Music to endMS. You will see and hear me, and my granddaughter, and even a couple of attempts at playing my flute and sax. Along with that, a song a day from now until the MS Walk. For example, what better anthem for MS than Chumbawumba’s Tubthumping, with lyrics “I get knocked down, I get up again, never going to keep me down!”

Want a sneak preview before you go to the page? Here’s the video that launches the whole campaign!